Local burn survivor helping others through West Penn support group

Sunday

Everything came rushing back to Dennis Gillin as he walked through the doors of the West Penn Burn Center in 2010.

The Beaver resident hadn’t been able to set foot in the facility at West Penn Hospital for the last 32 years -- since he spent eight weeks there as a child; since he entered the Pittsburgh hospital for the first time at age 9, when more 60 percent of his body was burned.

“It was overwhelming,” said Gillin, 45, recalling his first steps back inside. “When you walked in, it had been 32 years, but it still smelled the same.”

What also flashed back was the loneliness Gillin felt during recovery and at several points in his life as a burn survivor. It’s one of the reasons why last year, Gillin, along with several other survivors and hospital officials, started a support group called Burn Concern -- so that no one else who suffers a burn injury has to go through it alone.

“I don’t ever want anybody to be sitting there thinking that they’re by themselves, that they’ve got nobody to talk to,” Gillin said.

BURN DAY

Gillin spent April 1, 1978, playing outside with his best childhood friend.

The then-Monaca residents found an old doghouse; it was the perfect place to play hide-and-go-seek. The two young boys had a book of matches and had been flicking them back and forth at one another. They crawled into the doghouse, but as Gillin flicked the next match, a fire started inside, and they were forced to crawl out through the flames.

The boys were badly injured, with Gillin suffering third-degree burns over about 30 percent of his body, including his forearms, neck and face.

“(My friend) was with me but it was just us. There wasn’t anybody to say to us, ‘It’s OK, you’re 9 years old,” Gillin said. “There was no way that we had to know how to deal with it.”

Going home, Gillin thought, was finally the end of the physical and emotional pain he was going through.

“The hard part isn’t being in the hospital, the hard part is every day after that,” Gillin said. “I remember when I left the hospital I didn’t know what to expect. I left and I thought, ‘I’m gettin’ out of here, I’m never going to see you people again and I’m done.’ But that was just the beginning.”

BURN PAIN

Growing up after his injury, Gillin did pretty much everything that everyone else did despite undergoing surgeries nearly every three months until he was 18. He played sports and his family helped protect him from a lot, he said.

“It was after I grew up and had to go out into the world that it kind of made a difference. It kind of hit me,” said Gillin, a sales representative at Turret Steel Industries Inc. in Findlay Township.

Scars, and physical and emotional pain have been constant reminders of the traumatic event.

“I’m in pain every day that I wake up,” said Gillin, who has gone through more than 50 surgeries for his burn injuries.

Burn pain is something that many survivors experience and it’s not uncommon for some patients to develop chronic pain, weeks, months or years after the initial injury, said Dr. Ariel Aballay, burn surgeon and medical director of the West Penn Burn Center.

“Not only do (burn injuries) leave visible scars that many of these patients have,” Aballay explained, “but they also must deal with pain and not being able to make certain movements or certain actions ... not being able to go back to work that they had before the injury, and certainly that changes their lives.”

It’s an injury that survivors often have to see and live with for the rest of their lives.

“Imagine somebody who has an extensive skin graft on their neck or their faces, obviously they’re aware of this, and many times people can be not very sensitive, they stare, and the patient notices this,” Aballay said.

Gillin began struggling with depression after his mother died in 2008 and after he developed diverticulitis, which required many more surgeries and long hospitalizations, in 2009.

“It was a very, very lonely time,” Gillin said.

BURN CONCERN

That time also brought out another feeling for Gillin -- that he needed to give back.

“I felt like that was the third time in my life that I beat death,” Gillin said. “I wanted to just do something. There’s some reason I’m still here, for something.”

Gillin reached out to burn center Nurse Manager Esther Atwood and asked what he could do. In 2012, the hospital sponsored Gillin’s trip to attend the World Burn Congress -- an international conference sponsored by the burn support organization, The Phoenix Society.

“I walked into the room -- there was 850 people in this room -- and it was the first time in my life that I can remember that I walked into a room and people didn’t stand and look at me, because everybody else was just like me,” Gillin said. “And that moment right there literally changed my life. It just changed.”

Gillin met Ray Smith, a fellow burn survivor and patient at West Penn, and his wife, Beth Ann Smith. Ray told Gillin about his initial treatment at Legacy Emanuel Medical Center in Portland, Ore., and about the support he got from a group there known as Burn Concern.

“He talked about … how positive the experience was, just to be able to talk to other people that could understand what it’s like when you go into a grocery store and kids stare at you or when you wake up and you’re in pain,” Gillin said. “Ray talked about the good experiences that he had and how they would get together and talk and then I was like, ‘Well, we need to do this thing.’”

Gillin, the Smiths, and several other survivors were trained as volunteer support coordinators and now operate a Burn Concern chapter at West Penn, offering monthly meetings, events and individual support for survivors and their loved ones. The group is sponsored by the hospital foundation.

Aballay said the support is not only vital to helping patients understand their injuries and how their own lives will be changed, but it's also important for their family members.

“Because of the nature of theses injuries, they are unexpected,” Aballay explained. “All of a sudden they find … that somebody in their family who may not have had any medical issues up to that point, all of a sudden they are severely ill. All of a sudden they have to start dealing with these problems, the emotional part of it, and they are not prepared.”

Meeting other survivors who have gone through what they are going through, Aballay said, often helps patients and families to deal with the process of recovery and integrating back into the community -- especially after the survivor has gone home and must face the changes that often come with the injury.

“The support group can go over these problems and tell them how they adapted to the issue at that time and offer help in dealing with these problems,” Aballay said.

Gillin wants to share his experience, but doesn’t want anyone to have to experience what he did.

“There’s got to be other kids that did the same kind of stuff as me and I don’t want them to ever feel like I did,” Gillin said. “And maybe, if somebody needs to talk, whatever, I can come up and talk to them.”

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